SUPPORTING FAMILIES AND
INDIVIDUALS WITH I/DD
THROUGHOUT THE LIFECOURSE
An update on the Community of Practice
Mary Lee Fa...
Outcomes for Today
• Overview of the National Community of Practice on
Supporting Families
• Share on the key areas of lea...
Project Goal
To build capacity through a community of practice across and within States to
create policies, practices and ...
Funded by
National Partners
DCCT MO
TN WAOK
Type of Change that is Needed
Transitional Change
• “Retooling” the system and
its practices to fit the new
model
• Merger...
Long Term Goal
“Good Life for All”
The Individual will achieve self-determination,
interdependence, productivity, integrat...
REFRAMING OUR THINKING
What have we learned? Reframing the Conversation at All Levels
Focusing on ALL
25%
75%
National % Receiving
State DD Services
All 4.9 Million people with developmental disabilities
Base...
INDIVIDUALS
live within
the context of
THEIR FAMILY
Reciprocal Roles of Family Members
Caring About
Affection & Self-Esteem
Repository of knowledge
Lifetime commitment
Caring...
There are FAMILY CYCLES!!
The FAMILY is a SYSTEM!!
Supports should Enhance Real Lives
Current Support System
Real People, Real Lives
with Integrated Supports
16
Birth-----Early Child----School----Transition---Adulthood-----Aging
Bigger than Family Support:
Requires Organizing Cul...
Thinking About All Life Stages
Birth---Early Child---School--Transition------------Adulthood-----------Aging
Both in pract...
Identifying Integrated Strategies for
Delivery Supports: Not only DD Services
Developing Innovative Strategies for
Transformation within and outside DD
Eligibility Based
Supports
-Family and Self-Advo...
Pediatrician, Families and Friends,
Faith based
IDEA Part C, Parents as Teachers,
Health, Headstart
School, Special Educat...
Support Physical, Emotional,
Intellectual and Financial Well-being
Systems Change Framework
*Adapted from SELN Framework
Working Premises Regarding
CoP
23
DCCT MO
TN
WAOK
What is happening in the CoP States?
Connecticut
What Are We Working On?
Reframing the Message and
Conversations
Help people think differently about services ...
Organize A Collective Voice of Self-Advocates and
Families Representing Systems Change.
 Plan a large conference for fall...
Connecticut
• One full-time staff in Central office to focus on
systems change to support families
• CT Team: DDS Staff (1...
Sub-Committee Topic Purpose of the Group
Information Dissemination Enhance the supports to families to navigate
and access...
Connecticut
Committee Activities
All committees are creating information dissemination and
navigation materials which prov...
Connecticut
The DD Council’s Role
 Provide staff, council participation, oversight and
support to all project activities....
Missouri
What are we working on
• Enhance the capacity of State DD agency to
support families with members with
developmen...
Missouri
• States lead an 12 Regional TA positions for
systems change efforts to support families
• Retraining program for...
Missouri
What the State Team is Working On
Building a statewide movement and
network to support LifeCourse
philosophy and ...
Missouri
Specific Activities
• Enhance the capacity of State DD agency to
support families with members with
developmental...
Missouri
Division of Developmental Disabilities
• Family Support Coordinators at each of 12
Regional Offices with one stat...
Missouri
Developmental Disabilities Council
• Longstanding partnership and support of Mo
Family to Family Network and Reso...
Missouri
Developmental Disabilities Council
• Infused LifeCourse Framework and Supporting
Families information into Partne...
Tennessee
What are we working on
• Communication/Information Dissemination
– Inform and educate families and stakeholders ...
Communication/
Information Dissemination
• Supporting Families monthly e-newsletter
• Special issue of Council magazine
• ...
What have we learned from families?
FAMILIES NEED …
• To develop high expectations
• Support from other families
• Assista...
TN Council’s role
• Convene & facilitate state leadership team (principal
DIDD & Council staff)
• Develop & disseminate wr...
Washington
• Infused the lifecourse concept into their
existing “Informing Families, Building Trust”
messaging efforts
• I...
Washington
• Informing Families, Building Trust
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NACDD: Year One Highlights for AIDD Supporting Families Project

From NACDD's 2014 Annual Conference
Published on: Mar 3, 2016
Published in: Government & Nonprofit      
Source: www.slideshare.net


Transcripts - NACDD: Year One Highlights for AIDD Supporting Families Project

  • 1. SUPPORTING FAMILIES AND INDIVIDUALS WITH I/DD THROUGHOUT THE LIFECOURSE An update on the Community of Practice Mary Lee Fay – NASDDDS Molly Cole, Cathy Adamczyk, CT Emma Shouse, Wanda Willis, TN Vicky Davidson, MO
  • 2. Outcomes for Today • Overview of the National Community of Practice on Supporting Families • Share on the key areas of learning in States
  • 3. Project Goal To build capacity through a community of practice across and within States to create policies, practices and systems to better assist and support families than include a member with I/DD across the lifespan. Project Outcome • State and national consensus on a national framework and agenda for improving support for families with members with I/DD. • Enhanced national and state policies, practices, and sustainable systems that result in improved supports to families. • Enhanced capacity of states to replicate and sustain exemplary practices to support families and systems.
  • 4. Funded by National Partners
  • 5. DCCT MO TN WAOK
  • 6. Type of Change that is Needed Transitional Change • “Retooling” the system and its practices to fit the new model • Mergers, consolidations, reorganizations, revising systematic payment structures, • creating new services, processes, systems and products to replace the traditional one Transformation Change • Fundamental reordering of thinking, beliefs, culture, relationships, and behavior • Turns assumptions inside out and disrupts familiar rituals and structures • Rejects command and control relationships in favor of co-creative partnerships Creating Blue Space, Hanns Meissner, 2013
  • 7. Long Term Goal “Good Life for All” The Individual will achieve self-determination, interdependence, productivity, integration, and inclusion in all facets of community life Families will be supported in ways that maximize their capacity, strengths, and unique abilities to best nurture, love, and support the individual to achieve their goal
  • 8. REFRAMING OUR THINKING What have we learned? Reframing the Conversation at All Levels
  • 9. Focusing on ALL 25% 75% National % Receiving State DD Services All 4.9 Million people with developmental disabilities Based on national definition of developmental disability with a prevalence rate of 1.49%
  • 10. INDIVIDUALS live within the context of THEIR FAMILY
  • 11. Reciprocal Roles of Family Members Caring About Affection & Self-Esteem Repository of knowledge Lifetime commitment Caring For Provider of day-to-day care Material/Financial Facilitator of inclusion and membership Advocate for support
  • 12. There are FAMILY CYCLES!! The FAMILY is a SYSTEM!!
  • 13. Supports should Enhance Real Lives
  • 14. Current Support System
  • 15. Real People, Real Lives with Integrated Supports
  • 16. 16 Birth-----Early Child----School----Transition---Adulthood-----Aging Bigger than Family Support: Requires Organizing Culture, Policies and Practices
  • 17. Thinking About All Life Stages Birth---Early Child---School--Transition------------Adulthood-----------Aging Both in practice with individuals and in policy changes for systems
  • 18. Identifying Integrated Strategies for Delivery Supports: Not only DD Services
  • 19. Developing Innovative Strategies for Transformation within and outside DD Eligibility Based Supports -Family and Self-Advocacy Networks -Inclusive education with supports -Adaptive equipment -Problem Solving and Life Navigation -Universally designed and affordable homes -Grocery carts for older kids -EMT and Police knowledgeable and supportive -Strong families and friends to share lives with -Inclusive and accepting spiritual and recreational opportunities
  • 20. Pediatrician, Families and Friends, Faith based IDEA Part C, Parents as Teachers, Health, Headstart School, Special Education, Health, Recreation Vocational Rehab, Health Employment, College, Military Disability Services, Health, Housing, College, Careers Retirement, Aging System, Health Inter-Agency Collaboration and Partnerships
  • 21. Support Physical, Emotional, Intellectual and Financial Well-being
  • 22. Systems Change Framework *Adapted from SELN Framework
  • 23. Working Premises Regarding CoP 23
  • 24. DCCT MO TN WAOK What is happening in the CoP States?
  • 25. Connecticut What Are We Working On? Reframing the Message and Conversations Help people think differently about services and supports through materials development and meetings/discussions. Help families and self-advocates value and implement the concept of shared responsibility. Increase the use of assistive technology as a form of support. Help families think about community services differently.
  • 26. Organize A Collective Voice of Self-Advocates and Families Representing Systems Change.  Plan a large conference for fall, 2015.  Build a stronger partnership between self-advocates and families, including siblings.  Organize the collective voices of families and self- advocates for system change. Connecticut Strategies
  • 27. Connecticut • One full-time staff in Central office to focus on systems change to support families • CT Team: DDS Staff (1), DD Council staff (2), and CT Family Support Network representative (1) • Changing eligibility process to be more family friendly • Cross-department life course team • Creating sibling network • Creating consistent message • Focus on building “community teams” with new partners
  • 28. Sub-Committee Topic Purpose of the Group Information Dissemination Enhance the supports to families to navigate and access information and services within and outside the disability service systems. Family Mentoring & Leadership Expand family to family connections and enhance family’s ability to participate in leadership roles. Training & Education Enhance family access to family education and training best practice information. Self-Directed Services & In-Home Supports Enhance family’s ability to self-direct their services and to receive desired type and quality of in-home supports. Social Supports & Respite Expand & enhance opportunities for individuals to develop positive relationships with others through social connections and expand respite opportunities for families. Positive Behavior Supports Enhance crisis prevention, crisis intervention and positive behavior supports to individuals and their families Person-Centered Housing Expand and enhance creative housing options that are based upon person-centered planning and personal choice Employment Expand individuals access to competitive jobs Healthy Living Enhance family access to health information & to community-based health services Technology Expand & enhance the use technology at home, at work and while participating in leisure activities
  • 29. Connecticut Committee Activities All committees are creating information dissemination and navigation materials which provide an overview of the most important elements families need to know about their topic. Materials will be organized around the five areas of support:  Family Strengths/Assets  Assistive Technology  Community Supports  Other Eligibility Supports  DDS Supports •All committees will create a survey or data report that will be completed at least annually.
  • 30. Connecticut The DD Council’s Role  Provide staff, council participation, oversight and support to all project activities.  Provide financial oversight of grant funds.  Report on the Community of Practice at each Council meeting. Ensure Council participation at committee meetings and other events.  Interface with other Council initiatives that enhance the work of the CoP like the CT Cross Disability Alliance, support for the Family Support Conference and Partners in Policymaking training.
  • 31. Missouri What are we working on • Enhance the capacity of State DD agency to support families with members with developmental disabilities • Establish a materials that serve as a vision for a “good life” that serves as the “why” that guides systems and policy changes • Develop universal tools for Individuals with DD and Families to use to Navigate Lives • Enhance capacity of organizations to support individuals and families using LifeCourse Framework
  • 32. Missouri • States lead an 12 Regional TA positions for systems change efforts to support families • Retraining program for support coordinator • Partnerships for Hope Waiver focuses on employment and supports to families • Quality Outcomes redesigned to align with live domains
  • 33. Missouri What the State Team is Working On Building a statewide movement and network to support LifeCourse philosophy and elevating the role of “supporting families” in policy and practices
  • 34. Missouri Specific Activities • Enhance the capacity of State DD agency to support families with members with developmental disabilities • Collecting videos of a “good life” that serve as the “why” that guides systems and policy changes • Developing LifeCourse tools for Individuals with DD and Families (LifeCourse planning tools, folders) • Elevating “voice of family” in the Redesign of system • Infusing “family focus” in Employment activities
  • 35. Missouri Division of Developmental Disabilities • Family Support Coordinators at each of 12 Regional Offices with one statewide • Developing training and resource materials on LifeCourse for support coordinators to use with families • Changing the “front door” through direct referral to the MoF2F to receive information/peer support • Partnerships for Hope Waiver focuses on employment and supports to families • New Quality Outcomes redesigned to align with live domains
  • 36. Missouri Developmental Disabilities Council • Longstanding partnership and support of Mo Family to Family Network and Resource Center with UCEDD – Disability Resource Folders and LifeCourse materials – Alternatives to Guardianship Education Project embedded in MoF2F to sustain and increase dissemination outreach – Identification and training of Self-Advocate and Family Leaders as peer support mentors
  • 37. Missouri Developmental Disabilities Council • Infused LifeCourse Framework and Supporting Families information into Partners in Policymaking (annual class/post graduate) • Focused day at DD Council retreat in March on CoP using LifeCourse framework to organize • Hosting Listening Sessions and Survey to gather input from self-advocates and families on the Missouri Redesign (ourvoicemoredesign.org)
  • 38. Tennessee What are we working on • Communication/Information Dissemination – Inform and educate families and stakeholders in TN about: • Supporting Families grant, framework • Our state team’s commitment to learning from and listening to voices of families, self-advocates • Our desire to collaborate and innovate with existing and new non-traditional partners to achieve a “culture shift” to truly support families • Redesigning intake and waiting list case management – Investigating how to weave Supporting Families framework into support and assistance DD service agency provides to families not receiving services
  • 39. Communication/ Information Dissemination • Supporting Families monthly e-newsletter • Special issue of Council magazine • Resource folder • Multiple presentations, focus groups at TN Disability MegaConference • Lunch and Learn event for state agency staff • Upcoming: – Presenting on S.F. framework at forums across TN for families/self-advocates served under our Self-Determination waiver – State agency focus group
  • 40. What have we learned from families? FAMILIES NEED … • To develop high expectations • Support from other families • Assistance navigating service systems • Flexibility & self-direction in services • Knowledge about what’s coming next & help planning for future • Info on resources at variety of locations throughout communities • “No wrong door” approach to services • Support to become active participants in their own communities
  • 41. TN Council’s role • Convene & facilitate state leadership team (principal DIDD & Council staff) • Develop & disseminate written materials about initiative • Organize ‘Lunch & Learn’ for state agencies – personally recruited executive staff & Cabinet members • Collect & share letters from families in response to e-newsletter • Sponsor strategic planning event for state team with facilitator
  • 42. Washington • Infused the lifecourse concept into their existing “Informing Families, Building Trust” messaging efforts • Integrating “supporting families” into the K Plan • Surveyed families who were on the “no paid services” • Redesigning the process for the first point of contact
  • 43. Washington • Informing Families, Building Trust

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